Hospice caregivers and how a ministry of presence can give us a peaceful, loving end.
Eighty percent of Americans would prefer to die at home, but only 20 percent do. Those that achieve that good—or better—death often have the help of hospice. Registered nurse Julie Gilbert has invested the past six years in helping Mainers through their last days, lived at home, with dignity and surrounded by love. Death, she says, is a hard word.
But it is also just part of life, and a part of it she finds fascinating.
At 48, Gilbert has been working in home healthcare nurse for 25 years, including her time as a case manager with the Scarborough-based Hospice of Southern Maine. She sees about 13–16 patients a week in their homes. She goes from one family’s stressful, heartbreaking situation to another, covering about 50 miles a day from Biddeford to Limerick.
“It’s a calling,” she says. “There are different psychosocial, spiritual and physical dynamics that come up at end of life. It’s one of the real-est parts of life, when people face death.”
“If my patient isn’t actively dying right in front of me, I’m focusing on the life they still have left,” Gilbert says. “ I’m looking at what I can do to make them feel better, to visit with their family. It’s about living for the day, getting their symptoms under control so they can snuggle with their wife or they can make it to the end of the World Series. It’s about having the best day with the day in front of them.”
Last year, Hospice of Southern Maine cared for about 1,700 patients in Cumberland and York Counties, all certified by a physician as having a condition likely to end their lives within the next six months.
Mary Parsons, a volunteer at Gosnell Memorial Hospice House in Scarborough, says, “The biggest question is, ‘How long will this take?’ And the answer is, ‘As long as it takes.’”
Each patient—whether they are at home, in a long-term care facility or at Gosnell—has a team that includes a nurse, a personal aide, a social worker, a chaplain and volunteers.
“They’re dying and they have unfinished business,” Gilbert says. “There’s a lot of suffering that isn’t physical. So we have a whole team to help the patient and the family deal with those issues. When you’re faced with death, all the nonsense of life is stripped.”
Interfaith Chaplain Lindsay Roan describes her work as a “ministry of presence.” Simply put, she’s there to listen and help. “If someone wants to talk with me for two hours, I can do that,” said Roan. “It’s about what moves their soul and what keeps their soul stuck. I once talked with a woman who had an abortion 60 years earlier, and she was convinced that she was going to burn in hell because of that.”
As she does with all her patients, Roan asked the woman about her concept of spirituality. She says most of her patients see God as love or as a father figure or mother figure. She asks them, “If that’s who is running this place you’re going to, then surely that person must offer forgiveness? Did you expect your children to do the right thing all the time, or did you forgive them?”
“The day that patient died, her family and I gathered around her, and she hadn’t spoken in two days,” says Roan. “She opened her eyes, held up her hand and said, ‘It’s beautiful.’ She put down her hand and took her final breath.”
“The end of life is very intimate,” says Parsons, who supplemented her Hospice of Southern Maine volunteer training with an End of Life Doula certification. That role, more casually referred to as a “death doula,” is the opposite of a birth doula—being there for patients and their families at the end of a life rather than the beginning of one. “I see what their needs are—they may need emotional or spiritual support—and I talk with them about the process and about what death is.”
Every journey, physical and spiritual, is different, Gilbert says. “While some patients have just days on hospice, for others there’s a slow dwindle.”
Some patients, like 95-year-old Maxine “Mimi” Schultz of Biddeford, are recertified to receive hospice care beyond the six-month mark. She was on hospice for more than a year, her condition stabilized for about nine months and then she had a mini stroke and went back on hospice.
Schultz moved in with her youngest daughter, Pam Manoff, 11 years ago and has since dwindled from being able to drive herself to bridge games to being “bed bound” and having to be reminded to take another bite of food, or to urinate or to even open her eyes. She sleeps about 18 hours a day. In addition to dementia and a history of mini strokes, she has congestive heart failure and chronic urinary tract infections. The last time she tried to get out of bed by herself, more than two years ago, she ended up under her bedside table with a broken ankle.
“It’s about living for the day, getting their symptoms under control so they can snuggle with their wife or they can make it to the end of the World Series.”
“For people with dementia, there is a mind-body disconnect over time, and the patient needs their family to care for all their physical needs,” says Gilbert, who sees Schultz at least once a week. “They’re not actively dying, but their terminal illness is becoming more debilitating. This is common with people with dementia or congestive heart failure. Our focus goes toward quality of life rather than quantity. My favorite goals are keeping them home, safe and comfortable.”
A Stanford School of Medicine study shows that 80 percent of Americans would prefer to die at home, if possible. Despite this, only 20 percent do. Sixty percent of Americans die in acute care hospitals, 20 percent in nursing homes. Hospice of Southern Maine strives to support family caregivers in making this wish come true. Sometimes it isn’t possible because some condition has made in-home care impractical.
“I can see why—and I’m not putting anyone else down when I say this—I can see why people say, ‘I’m going to put mom or dad in a nursing home,’” says Manoff, Schultz’s daughter. “It’s a 24/7 job.”
Schultz is only able to stay at home—with her daughter, son-in-law, two grown grandchildren and a 2-year-old great-grandson—because her family is willing and able to provide around-the-clock care with the Hospice of Southern Maine team making house calls. Even though Schultz relies upon her hospice team members, Manoff tries to keep the “H-word” out of her mother’s room.
“I was brought up thinking hospice was the end of the world,” Manoff says. “When she hears the word, she asks, ‘Am I sick? Is there something wrong with me?”
Parsons was a caregiver for each of her parents to the end of their life, and she repeats advice that her own physician gave her: “At some point, the caregiver need to become the daughter again—as opposed to the caretaker—and let somebody else do the needful things. You need to have that role so that you can be emotionally there instead of thinking about whether they need a bath or need to be repositioned.”
Long-term caregivers sometimes become so accustomed to caregiving in the sense of keeping the person alive that they need help letting them go. They see the loss of interest in food and drink, for example, as a problem to be solved. But the goal of hospice is neither to hasten nor delay death.
“Death is as natural as birth,” Gilbert says. “Our body knows what to do, which is not wanting to eat, to drink, to stay awake or visit with family anymore. They don’t have the energy to deal with it. The body is on its way.”
Toward the end, families gather for what Gilbert calls “the vigil.”
“A lot of our patients arrive unresponsive or are unresponsive rather quickly,” Roan says. “I sit with the families and ask them to tell me about the patient’s fears, and we walk through those things while the patient can still hear—because no one really knows when hearing stops. I think we probably stop processing language the same way but we’re still aware that you’re surrounded by people who love you and you’re surrounded by love.”
Being part of that wave of love is what makes hospice work so compelling for the whole team—from the chaplain to the registered nurse, from the volunteer to the daughter.
“Healing happens with families at times of death,” Gilbert says. “It nourishes me as well. It’s a very precious journey, and I’m part of it.”
Amy Paradysz is a freelance writer based in Scarborough.